Anyone have success with the Ilieostomy surgery? I haven't….

Anyone have success with the Ilieostomy surgery? I haven't….

I had my surgery in november of 2011. It was a series of 3 surgeries because of how sick i was before hand. And i had my reversal surgery 6 months later. I had the stoma and all. I think if it wasn't so embarrassing to have a bag strapped to my stomach, that was the best i felt in the past 3 1/2 years. after the surgery i got a fistula, and had to have a surgery for that. I just was diagnosed with Crohn's disease in september of 2013, and now i'm on humira. Even though i was told that having my entire colon removed would prevent me from getting Crohn's….funny how that didn't work out. nothing seems to be working. i have leakage constantly, and humira isn't really helping….yet…..anyone have similar issues???? and what did you do to help it along??? diet??? juicing???? i'll DO ANYTHING!!!!!!!

Sorry for the late reply Meg_Hank. I responded to your thread in Your Story so hopefully that will help some. I'm going to tag a few people into your thread and see if they might be able to help or maybe they know of someone else they can tag into the thread. Absentminded, PsychoJane, Pointy_ears and Nyx do you have any advice? Thank you.

Your post is a bit confusing. Do you still have the stoma? You spoke of reversal, but then said you had a stoma and all. So, I'm not sure how to answer. I just wanted to clarify however, that having your colon removed won't cure Crohn's. That's only for colitis.

If you could clarify your post for me, I'll try and help you out!

I had the surgery, and had the stoma for 6 months. After the 6 months I then had the reversal. I'm fully aware that having my colon removed would never cure crohns. But I was never told I even had it until a year and a half after the surgery. We were attempting to prevent crohns and that did not happen :/.....so my current status would be that of the J-pouch......and it's been extremely difficult with it. Do u still have your stoma?

Hi,

I had a temporary Stoma for three months (had my reversal around this time last year). I had five fistulas (fistulae?) going all over the place, to my bladder, rectum, and between loops of bowel, I had them removed and the Stoma was to ensure that my rectum healed properly.

From a Crohn's point of view my Stoma did the job, I've been off all medication for over a year and have only recently had a flare up of symptoms. From another point of view, the past year has been horrible, I had serious post surgical complications after my reversal which eventually left me with an abdominal fistula where my Stoma had been, so I've had a Stoma bag anyway!
I had surgery last week to remove the fistula so I can now focus on getting my Crohn's under control again.

What's my point? Um, in my case having an ileostomy was a positive step towards putting me in remission, this flare up has only lasted so long because I couldn't have any meds to control it as I was so close to surgery. I'm currently trying the FODMAP diet, it's early days so don't know how much it is working yet!

I hope you find some relief soon! Big hugs x

Meg_Hank said:

I had the surgery, and had the stoma for 6 months. After the 6 months I then had the reversal. I'm fully aware that having my colon removed would never cure crohns. But I was never told I even had it until a year and a half after the surgery. We were attempting to prevent crohns and that did not happen :/.....so my current status would be that of the J-pouch......and it's been extremely difficult with it. Do u still have your stoma?

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Thanks for the clarification. I do have my stoma, mine's permanent, my rectum's too wrecked (ha ha) to have a reversal. How long have you been on humira? And have you tried any of the other biologics to get your Crohn's under control? I'm assuming the leakage is from a flare? Or is it from something else?

I have been on humira for only a few months, since November right before thanksgiving... The leakage is from a fistula surgery which was almost two years ago now, little to no improvement with the leakage. ( so frustrating) ... No other biologics yet, I had tried remicade way back before when I still had UC prior to surgery... It did nothing but I think I was too far gone at that point. I just feel like it's so hard to be proactive when drs are so non-aggressive. Question for u. If u could have a reversal, would u do it?

No, I wouldn't have a reversal even if I could. My life is pretty good with my stoma. I have such a better quality of life now, than I did before my surgery. Besides, I don't miss all the problems with constipation and trying to go to the bathroom. Don't get me wrong, the stoma is a bit of a pain in the arse sometimes, but it's 100x's better than it was.

I too have a permanent stoma, well it was not suppose to be permanent but once they clarified the diagnosis I decided it was way too risky for me to attempt the procedure. I don't have to be scared of accident and can enjoy most of every moment with a stoma more than having a reanastomosis I'm pretty sure. The GIs that have worked with me would all agree it was a procedure that was not in my best interest considering the risk of pouchitis and everything associated with a crohn diagnosis.

Like Nyx said, "the stoma is a bit of a pain in the arse sometimes, but it's 100x's better than it was".

That's extremely interesting. Just out of curiosity, when I had my stoma, the glue would stop holding up. I had a lot of issues with the bag coming loose and had a very large mess...does that happen to you frequently??

I feel like I was never told about the huge risks. I mean I feel like it was not even a question whether I had a reversal or not. I don't think I had a choice. I'm hoping I can have a somewhat "normal" life with the JPouch before I have to go back to the stoma. I just need some better quality of life. As far as my mental, it's just breaking down at this point. It effects everything!!!

Meg_Hank said:

That's extremely interesting. Just out of curiosity, when I had my stoma, the glue would stop holding up. I had a lot of issues with the bag coming loose and had a very large mess...does that happen to you frequently??

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I can't advise you much as my situation is quite different, but I love my ileostomy and have had maybe three leaks in the three months that I've had it (and at least one of those would have been preventable if I'd been paying more attention). Also all these leaks occurred early on, and I've since had some tape sent by my ostomy product suppliers which give more protection from leaks, and haven't had a problem since.

I suspect my ileostomy is much easier to live with than most - I also only empty it a couple of times a day, and its activity is at very predictable times, meaning I can change the bag when I know it's unlikely any output will be coming out - so my experience may well not be typical, but it is possible.

My stoma nurses say that one factor helping me avoid leaks is that I have a flat stomach - rolls of fat make it harder for the surgeon to place the stoma in the optimal place and make it harder for bags to stay stuck in place.

Also it's definitely worth investigating the various tapes, glues and other items that help keep the bag on. I've seen some mouldable rings that are supposed to be very helpful with this. Dietary changes, the frequency with which you change the bag, and making sure (ask a stoma nurse) you are putting the bag on properly and that the bags are cut to the right size for the stoma can all help too.

I don't have a problem with adhesion either, but then again I have a colostomy and not an ileostomy, so my output is very thick and hard. I rarely get liquid output. I've not had problems with leaks either. Again, for the same reason.

Meg, if ever you go back to having a stoma, I can highly suggest you to search carefully for your surgeon. I got my first stoma at the age of 14 (I always had one since but it had to be relocalize later due to disease activity) and my mother at the time did look up to find out who was the best surgeon for ostomies. To give you an idea, I had to visit a wound/ostomy nurse in a different city and both her and her assistant said something about how typical to that surgeon my stoma was. He is said to have "fairy fingers" as we say it in french. He did my second surgery as well and the stoma is identical to the first.

Sometimes miracles can't be made but I would be tempted to say that certain surgeon master the techniques better than other. It is just the same as some people paint better than other. That's how I see it. And well, I believe this can make a difference. That, along with the adequate material.

I used to have issues during the first few years I had my ostomy. I mean, I would not consider them to be frequent at the time (now I would). Maybe was it a few time a years. It was only that the supplies I was using were not the best for me. I guess everyone can't manage to find one that will nearly never fail but people like Nyx, UnxMas and I, it is possible to do great with it. Maybe it has to do with the fact we all use the same product .

Once again, it's not only bright magic, but if you need it again, you can embrace the hope to find a combinaison that will work out for you. If you ever need it, many around here have excellent idea to share in order to make things easier with an ostomy.

Thanks everyone. This site is wonderful. I wish I joined it sooner. I could have used the support a few years ago too. I see my dr on the 5 And I plan on attacking him with awesome questions thanks to all of you. Can't tell you how much I appreciate the replies!!!!

Meg_Hank said:

Thanks everyone. This site is wonderful. I wish I joined it sooner. I could have used the support a few years ago too. I see my dr on the 5 And I plan on attacking him with awesome questions thanks to all of you. Can't tell you how much I appreciate the replies!!!!

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Good luck. My Ostomy also changed my life (for the better).

PsychoJane said:

Sometimes miracles can't be made but I would be tempted to say that certain surgeon master the techniques better than other. It is just the same as some people paint better than other. That's how I see it. And well, I believe this can make a difference. That, along with the adequate material.

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I'd agree with this. My surgeon had operated on me many times before my ileostomy surgery, so I knew he was a great surgeon - I'd never had any complications and my scars were barely visible. I did get some complications after my ileostomy surgery, but they were unforeseeable ones, just bad luck and nothing to do with the surgeon's skill. In fact I believe I would have had a better time following my ileostomy surgery if it wasn't for the fact that my surgeon got sick the day after he operated on me and had to leave me in the hands of another doctor, who didn't pick up on the complications I had emerging for several days. Perhaps I'm giving my surgeon too much credit, but I like to think that if he'd been there the day after my surgery as he had with all the others, he'd have seen something wasn't right. I think it's a great help if your surgeon knows you well, especially if he/she has done any earlier operations you may have had.

I guess my concern is the reversal and the JPouch. I look back and wish I had seen a different doctor before I had my colon ripped out. And I have plenty of "what-ifs". I was told this would solve all my problems but in reality all I've had is problems. And now that I have crohns, and having to be on humira on top of having the j-pouch and the fact that I don't know what the out come will be, just freaks me out. I just feel like no one is being proactive to get to the bottom of why nothing is working and why I can't get into remission!

My ileostomy saved my life. I have nearly bled to death many a time. Thank goodness it was usually in the ICU.